Reinvention: Caring for Loved Ones with Alzheimer's

Onto each of our parades some rain will fall . . . a deluge or even a hurricane. This series spotlights four women who rode out the storm and seized the chance to start something positive and meaningful

by Amanda Robb

“I want our generation to act up and say this is unac-ceptable,” says Alzheimer’s activist Meryl Comer, shown here at Geoffrey Beene headquarters in New York City.

Photograph: Catherine Ledner

In the early 1990s, Meryl Comer and Harvey Gralnick lived the life of Washington, D.C., glitterati. Comer anchored the television show It’s Your Business, a nationally syndicated debate program. Gralnick, a doctor, headed hematology and oncology research at the National Institutes of Health. But suddenly Gralnick started losing track of papers and getting lost on his five-minute drive to work; he grew very self-involved and aggressive.

Comer, now in her sixties, wondered if the stress of the couple’s latest -project—remodeling their 1930s home—was getting to her husband. “You always hear renovations are grounds for divorce,” she says. “But he became truly impossible. I really thought, I am going to leave this man.” Then one evening, Gralnick surprised Comer by holding up a check and asking her where he was supposed to sign it. Later, she accompanied him to an event where he was scheduled to give a speech to 400 doctors. As she watched from the audience, he lost his place midway and could not recover to continue. “Everyone laughed,” Comer recalls. “I felt like screaming, ‘Doctors, can’t you see this man is ill!’ ” The session was abruptly canceled. Not long after, Gralnick flew to a research conference in London, decided he was in Canada and somehow made his way to Paris. Comer called friends in Paris to reroute him back to the United States. At the airport, she talked her way through customs and literally recaptured her husband.

Two years after starting to exhibit symptoms, Gralnick, then age 57, was finally diagnosed with early-onset Alzheimer’s disease. Comer was 50. “No facility wanted us because the medicines made him wild,” she says. “People think Medicare pays, but it doesn’t. Both of us were out of work at the peak of our careers. We were drawing down whatever portfolio we had; we didn’t have long-term-care insurance.” Comer started pulling daily 12-hour shifts as a home health care aide. Her husband needed round-the-clock care, so she also had to hire people to cover the other shifts.

Comer had given up her TV show; next, she turned her reporting skills to gathering information about Alzheimer’s and became outraged by how the illness was covered in the media, its devastation glossed over. “Learn a language or go dancing to improve your brain!” she chants in a singsong voice. “There are no longitudinal studies that show anything like that prevents Alzheimer’s!” Now she had a mission. For medical journals, she wrote about the human toll of the disease. She allowed PBS NewsHourto come to her home to capture on film what it’s like to care for someone with Alzheimer’s. She testified before Congress in a plea for increased research funding. Members of Congress immediately asked Comer to join a task force charged with setting national priorities for the disease; in 2009 the group issued a strategic plan. “There are no Alzheimer’s poster children,” she says. “There are no cute babies with the disease. And the boomer generation is in denial—it’s the perfect storm.”

In 2007, Comer was contacted by Tom Hutton, trustee of the Geoffrey Beene Foundation, which is funded by profits from the late designer’s company. Since 2005 the business has channeled more than $150 million to the foundation, which supports Alzheimer’s projects, among others, as part of its mission to fund research pertaining to medical, educational and social issues. Hutton asked for a meeting with Comer, who had recently won a Shriver Profiles in Dignity Award for her work. “I thought I was there to brief him on advocacy in Washington,” Comer recalls. “But he said, ‘I’ve got a better idea: Why don’t you run a foundation for Alzheimer’s?’ ” That November, Comer launched the Geoffrey Beene Gives Back Alzhei-mer’s Initiative (geoffreybeene.com/alzheimers .html) and started putting money into programs. So far, the initiative has committed more than $1.5 million to research at UCLA, Yale, Mount Sinai, Massachusetts General Hospital, the Institute for Molecular Medicine and the University of Rochester.

Five years ago, Comer’s mother was diagnosed with Alzheimer’s. Now she lives in her daughter’s dining room turned bedroom, cared for by Comer and the three rotating aides who also look after Gralnick. Struggling with this double difficulty, Comer finds support in a network of good friends. “ ‘Let’s go out and breathe,’ they tell me, so we go hiking,” she says. “But really, Geoffrey Beene saved my life. The foundation gave me a way to flip the heartache and make something positive.”

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